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folfox club treatment #4

LOUSWIFT
Posts: 372
Joined: Aug 2006

Lori I thought you may get the chance to pass me. My White blood cells went up but my platelets crashed another 10,000. I thought I was going to get delayed but they decided to go ahead but drop my dose 10%. They felt that this would still keep me on schedule and allow my platelets to climb out of the danger zone. My side effects went crazy on this 10%reduction? My hands reacted to very minor cold which they never did before and were too painful to unbutton my coat. When I got home I was sitting here in my computer room a warm room due to my server and computers then all of a sudden I felt like I couldn't catch my breath. I started coughing violently. I calmed down and things returned to normal in a few minutes. Fortunately (sort-of) I broke some ribs in a cruiser accident years ago and had the same trouble breathing. Steroids are blocking the nausea for now and no abdominal cramps (yet-which is what I fear the most). Really tired didn't sleep much last night so I'm going to try a nap. I guess I can't complain about all this it could be worst and according to my ONC nurse...it will be! Good luck Lori with your Folfox situation. Its too bad that someone can't hand us a menu and we get to pick what side effects we must choose to have to take Folfox. This would seem to be the most fair. I wonder what we would choose? Take Care Lou

Lori-S's picture
Lori-S
Posts: 1286
Joined: Sep 2010

Sorry you're having tough time. Thanks for the udate. I think of you and your treatmetns and am glad to hear from you

I am having very rought time today. Oxy pins and needle started before infusion even done instead of day after so typing is hard. NO REACTION this time with double benadryl push! woo hoo! But, started feeling bad and slept during infusion and came home and slept. Usually don't do that. And I started having back, hip and leg pains pretty bad yesterday and still hurting today ins spite of pain meds that I finally broke down and took. Hope it's not those damn "spots" from my scans acting up.

Hang in there Lou. HUGS

PS: If they handed me a menu of side effects .. I'd just say .. no thank you I'm on a diet!

LOUSWIFT
Posts: 372
Joined: Aug 2006

Sorry Lori wish there was something I could do for what your going through? You are amazing you have it worst than I yet never a down moment? I don't take pain or many other meds much either. I think with all this medication I'm starting to rattle when I walk. I usually have back pains an hour or so after they end the oxi/folinic acid and start the 5-flu pump so I don't know which drug to blame. Still the pain comes and goes and right now last about a day. I do know when they disconnect and they give me the Neulasta shot for white blood cells the back pain does return but not as bad or for long. As far as those spots from your scan I want them acting up...I want that cancer to scream in pain dying like it should. I know its sadistic but it brings a little smile to my face to visualize cancer's death. I can take it if I know my cancer is suffering too...I know you can too kid! Hugs Lou

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okthen
Posts: 232
Joined: Jun 2010

You've both been on my mind today, I'm sorry so rough for you both! )o:
Jack is doing great, happy as a lark that he is not getting chemo till the 1st, me, not so much....I am horrible to be worried that he feels good. I want those cancer cells killed, I don't want to give them time to hang around...hmph.

I will be thinking about you two daily! Please know that my prayers are with you to stay strong and feel better!
Chriss

LOUSWIFT
Posts: 372
Joined: Aug 2006

Chriss Chemo is hard but if I could have started it the day after surgery I would have. My Onc believes in the ability to kill cancer when it spreads. I believe kill the beast before it spreads or spreads beyond where it is. If I had listened to my ONC when my CEA went up to 14.6 I have no doubt it would have gone beyond my three localized to site nodes to who knows where ( of course it may have who knows). ONC wanted to wait 6 more weeks after a CEA reading of 14.6? I kid you not "to give it time to grow so we can see it better". I don't think so. Fortunately my persoanl doctor didn't think so either and ordered a colonoscopy. The tumor and nodes were located and removed within three weeks which saved me three weeks of growth and spread. Could my ONC be right that it would not have made any difference? Maybe... but I'm the one facing a bad outcome if he's wrong not him. I don't blame Jack for not wanting to do chemo. It like shooting yourself in the foot to check to see if the gun is loaded. The gun needs to be loaded so you can kill what's trying to kill you. But crap that's my foot I'm shooting. But I see where Jack is coming from-soon or later it has to be done putting it off may mean you have to shoot the other foot later. Sorry about the metaphor, it late and I'm on my chemo brain pump. I will post the good and bad as I go through this as I'm sure Lori will to hope it helps. Lou

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jararno
Posts: 189
Joined: May 2010

Sorry you two are having to play the side effects game! The nausea/vomiting was the worst for me at first ( The Sancuso Patch helped along with Emend pills...both very expensive ) For the Trots I usually stayed near a bathroom, but my meds for nausea caused constipation...so I would get the severe cramping and couldn't "go"! I decided the Trots were a better alternative for me!

As for picking Folfox side effects.....That would be hard. It seems like they change as time goes on. My peripheral neuropathy really didn't kick in until the last few treatments and has gotten worse in the last month! I slept better when I was having Chemo ( my Doc was suprised by this, but I am a low energy person and slept alot prior to chemo!)

I am so mean....I really wish there was a way to have my family/friends understand how bad you feel from the side effects.

Glad we have a place to talk about all of this crap ( literally ) where everyone understands what you are going through!

Take Care.....

Barb

LOUSWIFT
Posts: 372
Joined: Aug 2006

I agree it hard to be nice when you deal with people who don't understand. Since I get hit with chemo yester day and for me my worst time is the day after disconnect from the pump though the next 3-4 days. In those days I want to be left alone to handle my situation. My family decided since I would be too sick for Thanskgiving they showed up Sunday for Thanksgiving. Of course I was have a severe bout of stomach cramps. I was so angry at my wife for allowing this. What I should have done was considered why they wanted to do this. What was best for me wasn't best for them so it took a lot from me to struggle through the situation and the guilt of directing my anger at her.

Low Energy I really understand. I'm finding as soon as I can after disconnect I start flushing the chemo out not to the level of diarrhea but as much as I can. This seems to bright back my engery quicker. Maybe it's just a placebo effect but for me it seems to work maybe just in my head.

I don't take medication for nausea any more. My Onc PA put me onto tums which helps when it gets bad. Doesn't always work but works enough to get me through the very bad times.

Take Care
Lou

coloCan
Posts: 1956
Joined: Oct 2009

each treatment, in a cumulative sort of way, not like 1+1=2+1=3+1=4 etc but as 1+1=3+1=6+1=11,etc. The effects of the oxi are worse on you than the other components of the FOLFOX. Just hope it destroys all the cancer cells to make it worthwhile.....Hope all goes well for you and others dealing with this.....steve

LOUSWIFT
Posts: 372
Joined: Aug 2006

Thanks Steve
Yes I know the cumulative effect and the retaining effects of our bodies to "keep" oxi and 5fu in our systems for a long period of time perhaps better expressed in these terms where X=number of treatments; M=molarity(infusion rate of Chemo in solution); T=time; N=ned; V=variable (individual side effects) then the formula would be (X+M)x T=N-V math or algerbra it sucks!!!! I just wish as with my menu idea that there was a C=constant or non-variable. In other words what side effect(s) we can expect as an absolute as we do folfox instead of not knowing or getting unwelcomed surprises. It would thus allow preparation at least. I know too much to ask. Perhaps the greatest unknown is we endure all this and there already be no cancer left alive or worst chemo doesn't work. I know they are working on nano molecular cell killers but in my view the trouble is creating the homing device so the nano killer cells know what to direct to kill. We have this biologically in white blood cells but it gets turned off by cancer. So in a sense there is likely just a protein and amino thread away from a vaccine and maybe a cure. Problem is as always money and profit. I am hoping to do 8 treatments of folfox but if they keep reducing the "M" they may extend it beyond 8 to 12. Just can't get the platelets to increase with their 4-8 day survival rates.
Take Care
Lou

Lifeisajourney
Posts: 217
Joined: Apr 2010

I just wanted to say, my thoughts are with you both and everyone going thru chemo. Reading you posts reminds me that I had not found this site and knew no one else who was experiencing folfox when I was going thru it. The only positive I can come up with is that you have others to relate too. To me it was hell and I only made it thru 7. Bless you both, cumulative is for sure. Thoughts and best to all who are going thru their various chemos and procedures, you have to experience it to understand it. May the new year be the year of advancement in a cure for this and other cancers. Bless you all..Pat

LOUSWIFT
Posts: 372
Joined: Aug 2006

I hope I can make it at least thru 8 so my insurance will okay a CT/Pet scan and maybe see what is going on. If they show nothing then I'm done. I know I'm a reoccurrence of sorts different type of cancer in different area of colon but this time with 3 localized nodes my onc wants twelve. I feel right now he can do the remaining four. Thanks Pat Lou

AnneCan
Posts: 3692
Joined: Oct 2009

I am sorry you are both going through the chemo side effects.

LOUSWIFT
Posts: 372
Joined: Aug 2006

Every treatment a new adventure especially for Lori. Take care Lou

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Lori-S
Posts: 1286
Joined: Sep 2010

Life is an adventure ... chemo is an extreme adventure!

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Annabelle41415
Posts: 6722
Joined: Feb 2009

Sorry you are having such problems. The folfox is a hard chemo to deal with and the oxy is a bear. Hope that your counts go back up.

Kim

LOUSWIFT
Posts: 372
Joined: Aug 2006

They disconnected my pump today. We walked outside the hospital and the cold air (Michigan today in upper 20's). My face froze like frostbite. It was kind of like when your mom tells you "if you keep making that face it will stay that way". Well the warm of the car returned my face back to normal whatever it has become with the chemo. The hands still have not thawed out and I was wearing gloves. Another new adventure with Folfox. Anyway the fatigue has not hit me yet maybe the reduced dose helped. Still I've had about eight hours sleep in the last three days. Still always good to get the pump off it just gets annoying. Take Care Lou

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

I hope we all get through the folfox test! The comments make me nervous about what maybe ahead. At least downunder its summer and the issues with the cold are not so bad. Except now its so warm I have to put my vegies in the fridge so they don't go off. The catch is on the treatment days I needed gloves to get them out of the fridge to make my veg juice and then I had to wait for the juice to warmup before I could drink it. I have been up late reading posts and cannot sleep and suspect I am about to be knocked over by the folfox express this weekend. I got really tired and dizzy four days after treatment on the first dose.
Best wishes from downunder ( Sydney , Australia ),
Pete

AnneCan
Posts: 3692
Joined: Oct 2009

Welcome to this forum; I hope you will find it very helpful! Ron50 is from downunder also. Best of luck with your treatments.

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Kenny H.
Posts: 503
Joined: Aug 2010

Reading all this has me dreading next week. In for #3, was nice getting a extra week off.

OGammy01
Posts: 67
Joined: Oct 2010

I start my chemo next Tuesday for the first time and after reading all of the above I feel like running away. I already have neuropathy in my right foot and it is not fun! Oxy. side affects sound horrible and VERY EXPENSIVE! My insurance is changing Jan. 1 and they will not be paying as much as they did for chemo. This cancer thing is for the birds! Poor birds I wouldn't wish this on them.
Anyway, I hope you all get releif soon!
Hugs to all, prayers too!

I dread next week too!
I hope it goes well with you Kenny.

Diane

AnneCan
Posts: 3692
Joined: Oct 2009

Remember everyone's experience is different. You may not have the difficulties that some have. Try to take everything one day at a time. Good luck!

OGammy01
Posts: 67
Joined: Oct 2010

Thank you so much Anne. Your post has made me feel much better. I will take one day at a time...
I will get through this. Thanks again, Diane

AnneCan
Posts: 3692
Joined: Oct 2009

If you do have symptoms, you know where to come for answers, advice on how to deal with them etc. Please let us know how it goes!

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jararno
Posts: 189
Joined: May 2010

Sorry if we have scared you! Luckily I didn't have any idea what to expect when I went in for Chemo as I had not been told anything.....Unfortunately I still got the side effects!
( I actually got mad when some family members said that I shouldn't be looking up the possible side effects because then I would get them.....implying I was a hypochondriac! )

I think knowing the possible side effects is better, so you will not be blind sided when they hit! The cold thing is kinda hard to explain to anyone! I guess the best advice is to take it one day at a time. Trying to get your family and friends to understand what you are going through is also very hard. Emotions run high and feelings can be hurt. I was probably a bit more crabby during my off days ( as most people get when they don't feel well )!

It is great having people here who understand what we are going through and don't mind hearing about it! It is a great place to bounce off ideas, concerns and to meet wonderful people.

Best Luck in your new journey! You will do just fine!!

Take Care,

Barb

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Lori-S
Posts: 1286
Joined: Sep 2010

Best to remember "Your result may vary!" Everyone seems to tolerate the chemo in their own way. I am wishing that you have little to no side effects. Don't let us scare you but, do take things in so that if something comes up you won't be caught off guard. I like to prepare for the worse and hope for the best. I will hope for the best for you. We're here to support you and answer any questions that you might come up with. And Welcome to the board and the FOLFOX Club. Sorry you had to join.

OGammy01
Posts: 67
Joined: Oct 2010

Barb and Lori, Thanks for the "pick me up". Iam so glad I found this site! Never knew how much I would be learning about cancer. Does anyone have suggestions about what to eat when taking chemo? I know it is important to eat right.

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Lori-S
Posts: 1286
Joined: Sep 2010

That's so hard to say because it seems that what I ate before either doesn't taste right or tastes or smells downright nasty. I found that after a few days I eat citrus, sweet or spicy foods because they cut through the taste. Just remember to make sure foods are warm to hot. I drink alot of teas but got sick of hot chocolate. Hydrating is probably more important than eating. Make sure to hydrate! One thing that I finally found that works for me is I make lemonade at double strength and leave it out at room temp (which lately is cold) and when I drink it I heat up water and add the hot water to the room temp cup of lemonade to make it nice and warm to drink. I was surprised that I could drink warm lemonade but once I thought about it, I have lemon in my teas too so, I guess it's not that far off a thing to do.

Seems different things work for different people. Good luck!

OGammy01
Posts: 67
Joined: Oct 2010

Thanks Lori, warm lemonade I can do too.
I'll let you know how I'm doing.
A big hug!
Diane

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Lori-S
Posts: 1286
Joined: Sep 2010

Also, I make sure to have a whey protein drink each morning. Makes sure that I have some good things in me even if I can't really eat the rest of the day. I put about 3-4 tablespoons of heavy whipping cream in a glass (adds some unprocessed fats and calories) then I heat up about 8 ounces of water in the microwave and pour it in the glass then add the protein mix. That makes it warm enough for me to drink.

OGammy01
Posts: 67
Joined: Oct 2010

Thanks again Lori. These are the things I was hoping for. I will be ready!

Lori-S's picture
Lori-S
Posts: 1286
Joined: Sep 2010

Hey Mate!

I have a very good friend who lives in Mullumbimby. I know, quite a bit north. But, I do know that if someone says that you're the first cab off the rank that it is a compliment!

Welcome to the board. I just had my 3rd treatment and it hit me really hard. But, I've had some reactions to the oxi during infusion so I've already proven to be sensitive to it. I will hope that you have an easier time than I have. Good luck!

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pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

Its strangely comforting to think someone else half way around the world is at a similar stage of the folfox treatment cycle. Sorry to hear Lori-S you have been hit hard. I hope it eases off. My lack a local support group nearby makes this board really valuable source of support and advice. My folfox side effects have been mild so far, but they did reinforce for me the belief my cancer cells are actively being destroyed. When I get a side effect I keep on thinking I am beating my cancer. And to some extent the more it hurts me, the more I believe its hurting the cancer. This is a bit simplistic but it helps me cope and I have alot of faith in being positive and maintaining my hope.

I was lucky to get onto nbc breakfast tv last week with a scuba diving cancer story.
Just search for peter trayhurn nbc or stateline if you want to see the video.

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Lori-S
Posts: 1286
Joined: Sep 2010

What an incredible story. Thank goodness you had everyone looking for you right away. How great that your camera was found over 3 years later and you continued to take pictures during the rescue. Now, you are working amiracle with your cancer. Hang in there. Good job mate!

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